The purpose of the Ethics and Legal Standards WG is to provide a forum for focused discussion and development of legal (e.g., I.P.) and/or ethical (e.g., human subjects) standards for the AIRR Community.
Plans for 2021 include:
- Finalize, conduct and evaluate a survey to determine if researchers are withholding AIRR-seq data from publication or sharing, and if so, to discover what are their reasons for doing so.
- Investigate IP issues regarding software developed by the combined efforts of WGs and/or teams of AIRR Community Members.
- Develop IP guidelines for how the AIRR Community and its members can best achieve the Community’s goals.
- Provide guidance on GDPR issues
- Understand the restrictions on data sharing currently imposed by European database protection laws (i.e., Directive 96/9/EC), especially in the context of reference sequence sets (in cooperation with GLDB WG)
- Develop and ethical framework for patient engagement and studies involving indigenous people
- Develop recommendations for ethical standards for AIRR Community members to follow when generating or using AIRR-seq data from humans.
- Evaluate legal and ethical aspects of current Open Science practices and recommendations in collaboration with other stakeholders (e.g., RDA, IUIS)
Co-leaders: Tania Bubela, TBD
Members: Tania Bubela (Co-lead), Christian Busse, Daniel Emerling, Artur Rocha, Jamie Scott and Jacob Sherkow